How better data infrastructure can benefit citizens and the NHS

By Jeni Tennison – CEO, The Open Data Institute

There are significant benefits to making data for public health as open as possible. People who are trying to help the NHS work better need information and analytics to inform their decisions, and they rely on data. This includes access to patient records by healthcare professionals, analytics about the use of resources in hospitals, information for patients about where they can receive care, and research into new medicines and treatments.

In instances that have no sensitivities, such as lists of hospitals or medicines and their side effects, this data can be open for anyone to access, use and share. In other cases it provides personalised insights to individual patients and (with their permission) their carers, or secure and restricted access to information on groups of patients for qualified parties such as researchers aiming to understand diseases.

The data that underpins our health system is a new form of infrastructure. We are coming to rely on it the same way we do electricity or the Internet. We use it to inform our day to day lives as individuals. Businesses and the private sector use it to deliver services and plan their futures. Innovators use it to build new services, particularly using Artificial Intelligence, and researchers to understand the world. More access to more data helps all these uses happen more easily, more quickly and more accurately. The more data informs our lives, the more value we get from data. Arguably, there is nowhere that this is needed more than within the health sector.

As we aim to unlock these benefits, we must be mindful of navigating people’s concerns over the benefits of patient data or health data in order to reach that potential. At the Open Data Institute (ODI), we try to find ways to use data to improve health while protecting individuals’ needs for privacy. We need to consider how the products and tools innovators build help people make better decisions, but not forget that what powers those tools is data that comes from people.

We are at an interesting juncture in that we have real variations in people’s attitudes towards the use of data about them. Some people are never happy for data about them being used for anything except their own care, regardless of whether it’s anonymised or could benefit others. Other people don’t care too much who sees or uses data about them. And others are happy for it to be used by some organisations, such as the public sector or academia, and not others, such as the private sector. All these attitudes are valid, and all are audiences that need to be addressed if we are to realise the potential of data to innovate in public health.

Education and capability building help to ensure people are making informed decisions about how to collect, use and share data. Individuals need to understand both the benefits and the risks of data about them being used for different purposes. Decision makers such as clinicians or public health professionals need to understand how to use data and evidence in their decision making (and are frequently already well equipped to do this). Policy-makers need to know how to develop an open, trustworthy data infrastructure that works for everyone.

“Our health system data is a new form of infrastructure”

There are some great initiatives that aim to inform people about the positive impact of health information on public health, such as #datasaveslives and the Wellcome Trust’s Understanding Patient Data initiative. If we want people to embrace using data in healthcare, we need to ensure they understand how it is looked after and used, to help mitigate some of the understandable nervousness some of them feel. We need to look at who is best placed to have those conversations around the use and reuse of data, in a way that is informed and ‘human’. Clinicians have conversations with patients about blood and organ donation in timely and sensitive ways; perhaps a similar approach can work with data. The risk is that if the health service’s handling of data is not trustworthy or trusted, people will withdraw their consent for the use of data about them, or provide misleading information, resulting in data that is inaccurate or unrepresentative, and which cannot therefore be relied on by decision makers.

At the same time, there are many fundamental technical blockers to overcome. To realise the goal of data being used widely and securely, the systems GPs and hospitals use need to be interoperable with both each other and other applications, such that data generated in one system can be passed into and understood by another. When different services use different standards — whether those are different formats or terminologies — it becomes very difficult to create applications that can work across a variety of systems. We need the public and private sectors to work together to create and adopt open standards for health data.

As we look to the future, even in a public health system like the NHS, there is a growing need for the public and private sectors to work together. There is huge potential in patients sharing data collected by services provided by the private sector — data from wellbeing apps, wearables, or even shopping habits — with their GPs and researchers. This can only happen if there are open standards and defined ways of porting this data securely, and if people are comfortable with that level of data exchange. Building trust, in both the private sector and public sector healthcare providers, is vital.

Our data infrastructure is a joint creation with the public sector, private sector, communities and individuals. It needs to be developed thoughtfully, so that the data we use as societies and economies is as open as possible while protecting against risks to people’s privacy, corporate confidentiality or national security. At the ODI, we have been looking at ways to collaboratively build data infrastructure, where multiple organisations contribute to maintaining datasets such as maps and addresses. We have also been looking at the role of independent data stewards such as data trusts that can act as trusted intermediaries that determine who gets access to private or public sector data while putting the needs of people or the public first. New models for maintaining and sharing data are necessary to ensure that we get the best value from it.

As more data is generated, from more diverse sources and with changing technologies and demands, our health data infrastructure will also need to change. It needs to be as open and interoperable as possible, while being secure and trustworthy, so that it works for everyone.